Eugenics Comments

On a list I belong to about rare trisomies such as trisomy 18 and trisomy 13, an interesting debate has come up as a result of me posting a link to a recent news article about abortion of 'seriously handicapped' fetuses. The list has publicly available archives so I just thought I might point to some of the stuff I find particularly insightful (note: these are mostly parents of trisomic children):

"I question how society can be so foolish to make judgments on quality of life that are not theirs to make. This was how the eugenics movement began. We fool ourselves by believing that having extremely strict laws against sterilization without consent will prevent a recurrence. It is all about judgment of human life."
http://www.freelists.org/archives/tri-med/01-2008/msg00052.html

And someone posted this link:
http://bioethics.seattlechildrens.org/events/pediatric_bioethics_conference/2007_pediatric_bioethics_conference.asp#presentations

"I find myself having to say often, Annie may have had a genetic condition, but after all, she was human. "
http://www.freelists.org/archives/tri-med/01-2008/msg00085.html

"I think our special babies are gatekeepers of a sort. As long as their health is managed ethically, all children are safe to receive appropriate care. However, when they are treated inhumanely, and when multiple nursing standards and hospital policies are violated (and acknowledged as such) some very serious questions need to be asked. The choice of most to terminate, must never reflect the care that children born with these conditions (and any person with disabilties, for that matter) receive. I think that this is how the individual choice to terminate based on " unbiased information" ultimately translates into a eugenic movement. Failure for the law and government agencies to react condones and confirms the existence of eugenics, in my opinion."
http://www.freelists.org/archives/tri-med/01-2008/msg00087.html

Listservs

On the Angelman Syndrome listserv there was a request to post the list on people's blogs, so I decided to write a post about some of the listservs I belong to.
The Angelman Listserv
Angelman Syndrome is a condition caused by having no active copy of the UBE3A gene, usually due to 15q11q13 deletion. It is characterized by severe developmental delay, no speech, ataxia, seizures, hyperactivity, decreased sleep and frequent laughter and smiling. This list mostly consists of parents of Angelman Syndrome children, with a few exceptions (myself included). I stopped being really active in this list quite awhile ago when I was flamed for daring to say that maybe Angelman Syndrome kids wouldn't want a heaven where they're cured. A lot of the people acted like somehow they had personal knowledge of what heaven would be like eg "in heaven, my child will be able to speak." However, before then I also got some nice comments, especially when I answered questions about the genetics of Angelman Syndrome.
The Spina Bifida Listserv
Spina bifida is a condition in which part of the neural tube is underdeveloped so that some of the spine is poking out. I joined this list awhile ago but haven't been very active. In fact, I don't think I've posted yet, and I've only read a couple posts.
9TIPS
Trisomy 9, broadly defined, means there are three copies of part or all of chromosome 9. Most commonly it's either trisomy 9p or mosaic trisomy 9. This listserv is not really big, but it's fairly active. I occasionally post stuff, such as asking if apraxia of speech is common in trisomy 9p (it apparently is).
The Williams Syndrome listserv
Williams Syndrome is a condition caused by a 7q11 deletion in which individuals are mildly-moderately developmentally delayed, hypersocial and music-loving, with 'elfin' facial appearance and poor spatial and math skills. In general this list seems more aware that different isn't always bad than many others, possibly because Williams Syndrome has been recognized as being associated with musical talents such as perfect pitch.
The CDG listserv
CDG stands for 'congenital disorders of glycosylation'. These are a group of related metabolic conditions causing various features such as cerebellar hypoplasia, developmental delay, stroke-like episodes and a variety of health issues including liver problems and poor blood clotting. I don't think I've posted much to this list - mostly I just read other people's posts.
ACC-List
ACC stands for agenesis of the corpus callosum, meaning that the individual doesn't have the brain section that forms the primary connection between the hemispheres. Some people with ACC are severely delayed, others are apparently normal, but many are in between, with learning disabilities involving integrating different skills. I've noticed a lot of commonalities between autism and ACC, and like participating in this list partly because of that and partly because of the quirky sense of humor some of the members have.
Trisomy Listserv
Trisomy refers to having three copies of a chromosome or part of a chromosome. The trisomy listserv includes parents of children with a wide variety of conditions, with trisomy 13 and trisomy 18 the most common. I posted a blog entry awhile ago about one archived post from this list and when I posted the link to that entry on the list, I got some positive responses. A lot of these parents have been told their children have no chance of surviving and seen their children survive, partly because they did not decide that the kids would be better off dead. So in general this list is strongly anti-eugenics.
I will probablky finish this list later.

videos of trisomy 13 and others

I was looking for videos of people with trisomy 13 (Patau Syndrome) on Youtube, and found the following:

Kutlay
Little trisomy 13 boy, probably 1 or 2 years old, sucking on a water bottle.

Kelsey
An almost 21 year old t13 woman, described as the oldest surviving trisomy 13 person.

There was also this one with a boy who tested as having trisomy 13 on prenatal diagnosis and later had no t13 cells and normal development. They claim he was 'healed' but really it's nothing special, it happens to many with prenatally diagnosed mosaic trisomy. Sometimes the trisomic cells are only in the placenta and not the baby, so trisomy will show up on both chorionic villus sampling (taking a sample from the placenta) and amniocentesis (amniotic fluid, with flaked off skin and placental tissue) but not on blood tests. The only effect in those cases are related to the placenta - premature birth, slow growth, etc. No major structural anomalies or developmental delay, except for that which prematurity can cause.